healthiswealth1 (@healthiswealth1)

Good day, I have been suffering with X linked Ichthyosis vulgaris since childhood and as of present have been diagnosed with empty nose syndrome from a past turbinate surgery. This has made my life a challenge as of recent though persevering to find answers,bring awarness, and to hopefully achieve a cure with both of my medic ailments. I also enjoy reading about regenerative medicine and how the therapies being conducted can be utilized for cures.

Thank you for the response. There are very minimal treatment options as only 6 ent worldwide attempt to treat ens. Treatments are also out of pocket unfortunatley and results tend to be short lived as others have mentioned. It would be great it mayo clinic could conduct a clinical trial or engage in more research as this condition a long with atrophic rhinitis have limited exploration in in regards to treatments and someday cures. It would be groundbreaking if more stem cell or regenerative measures can be undertaken for a community that has no formal trearment protocol to begin with a long with very devastating bodily and autonomic health issues that progressively worsen.

I have been formally diagnosed with empty nose syndrome due to suspected nerve damage, lack of nasal mucosa, and apparent scarring on my epithiliam that apparently did not heal correctly. The functions in my nasal turbinates progressivley got worse after my surgery that occured a few years ago(ens can occur after surgery, months, or a few years after) according to Subinoy Das of the sinus institute in Colombus Ohio. Fortunatley I still have my nasal turbinates, though the functionality as stated above is what has caused a number of issues. My lack of air sensation has thrown a constant discord in my autonomic nervous system as far as symptoms of dysautonomia/pots(constant chronic muscle tension, swallowing issues, frequent urination, excessive sweating ect.) which is theorized to be associated with many individuals who have Ens. My question is if there is currently any regenerative therapies outside of using stem cell injections to better recooperate affected nasal organ and surrounding nerves? Also if there are any sprays or techniques to re epithilialize damaged nasal mucosa?
Lastly, is there any modern technology that can detect damage on my nasal turbinate sensory nerves that are supposedly assosiated with the trigenial nerve?

I have been suffering with x linked itchthyosis since childhood. As I have done some extensive research on x linked Ichytosis vulgaris, I am aware that gene therapy is emerging in treating these particular rare skin disorders. Skin products unfortunatley have had little resolution
And ufortunatley do not remedy the root cause which of course comes from a defective gene. My question currently is if mayo clinic is conducting any clinical trials trials in regards to genetic therapy on itchytosis or related skin disorders?

@jamienolson , I live in san diego ca. I have seen 3 ent specialists and one mentioned I had dry sinuses(which I fear could be a symptom of the turbinate reduction 4 years ago. And also a very bothersome post nasal drip sensation(as if you went for a run and have mucus in your throat feeling) fortunatley its not green or yellow but more of a sticky clear white. I was cleared of any major pollen type allergies or pet allergies. My symptom of suffucation (hard to sense inhale) seem more under very humid hot conditions and very cold dry conditions/high altitudes. I am also having issues doing physical labor or even power walking due to feeling breathless. The surgery was also very conservative and still have a 3 sets of turbinates. I have been to the Er and seen various doctors and it apears my 02 lvls seem fine and have had ct scans and chest lungs xrayed and everything apears normal… Yet im still feeling these distressing symptoms. Any other suggestions would be appreciated.

I have been expiriencing some very odd symptoms and will try to keep it condensed. In 2014 I had a turbinate reduction(no turbinates were completely removed thankfully) and a septoplasty due to my constant stuffyness and smothered feeling upon waking up. About two years go by and my stuffiness apears the same and also noticing that I feel much more winded when doing activities. Fast forward to july 2018 and I had my first ever anxiety/panic attack. When this occured I felt numbness in certain parts of my body which most of these symptoms are gone. The most notable symptoms that still carry on are these episodes of breathlessness upon simple exertion such as walking/moving fast paced, moving objects over 10 lbs, or pushing my laundry basket, going from low to high altitudes. Also speaking more then a minute causes a pressure breathlessness sensation near my pharynx.It is to the point where I had to leave my job due to the distressing feeling of passing out or running out of breath. I was cleared of any lung or asthma problems and heart apeared healthy from the tests and ct scans done.I am also relatively healthy and try to eat as clean as possible, bit have left out cardio due to my concerns. Ive seen 3 ent specialists and have cleared me of anything out of the ordinary.

What I am wondering is if by any chance a side effect from the turbinate surgery 4 years back could have altered any inhale signaling to the brain or nervous system. I know this could be over thinking but I have been expiriencing several symptoms related to ENS syndrome or empty nose syndrome which correlates to sensations of breathlessness, dry nose(as I have most of the time) and intermittent loss of sensation of air when inhaling through nose(usually when its too hot/humid or too cold). Again these symptoms all seemed to have come after my apparent anxiety attack and Still scratching my head in the sense if these symptoms are anxiety induced or complications of the surgery which I did not feel anything unsual until recent other than dryness and post nasal drip feeling since then.